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Monday, July 18, 2011

Brief recap, in August 2009, Gabriella wished for her Make a Wish trip. She had been telling us she wanted to go on the Disney boat (thank you Travel Channel...lol), but she was far too unstable to be out to sea at the time so we had to veer her away from that idea. Make a Wish planned a beautiful week long trip to Disney World instead, since Gabriella also said she wanted to go to Cinderellas castle! Of course, as most of you know, Gabriella suffered a massive stroke 2 weeks before going on her trip. The recovery from stroke, waiting for transplant, transplant and recovery, and adjustment time after there led us to January 2011 when she was finally deemed safe for travels!

When her Wish Granters came back to talk to Gabriella in February this year, almost exactly 18 months after her first visit, she boldly declared she wanted to go on the Disney boat! Make a Wish has put together a lovely 5 day, 4 night cruise out of Florida on the Disney Dream. We leave in a couple of months to enjoy this opportunity of a lifetime! One day of travel, 5 days on a boat and the plan was to fly home that night after we dock.

Gabriella picked 2 excursions from a list about 4 pages long! When we dock at Castaway Cay, Paul & his princess will be in thigh high waters alongside the ocean feeling and learning about sting rays. Gabriella LOVES sting rays... I think it is their velvety feel and how they flow like satin. Then when we dock at Nassau, she chose to do the 6 hour long dolphin encounter where we will have a lunch by a dolphin tank, go through the day to day life of a dolphin trainer and best of all, SWIM with dolphins! All 4 of us get to do this excursion and I don't know which one of us is more excited!!!!

Paul and I have put in SO much of our energy into making Gabriella feel like any other kid, and it shows in her attitude. She never acts like she is different or lacking in anything, because we absorb any of that for her and discipline her just the same. Her doctors, therapies and meds are just a part of her and we move on quickly from whatever we have to do that day medically to put more emphasis on our "normal" portions of life. We have seized opportunities to make memories and been able to give both of the kids more than we believed possible, because tomorrow is never guaranteed for anyone, but especially a medically fragile child. This Make-a-Wish trip is something monumental in that process for us, and I know that is what Make-a-Wish strives for. Something absolutely unattainable for a family like ours. An opportunity out of the ordinary for ALL of us in a positive way, not just out of the ordinary because we are a family with a "sick kid" on a lifetime medical journey. It is an escape, a memory to top all others and a way to "reward" my warrior princess and patient prince for the life they have been pushed into but embraced so well. I can only believe this is what all families feel about Make-a-Wish and that is why it has become such a passionate charity of mine, to which we try and frequently take donations of new toys and activities to. PLEASE contact your local chapter to see how you can help!!!!

Anyways....

Of course, you all have gotten to know us so well, that you know we would sell our souls to the devil for our kids. We encourage them to dream big... because nothing is impossible! In that, we asked Make-a-Wish to send us home from our cruise a few days later than planned, extending our trip at our own expense, and taking the kids to a place we will probably not be able to go to again in the near or distant future.... Disney WORLD! This means we will be responsible for hotel (that was ever so generously provided to us by a friend who has access to the good stuff), Disney World tickets and food for those extra few days. In the grand scheme, this is so minimal. The blessing of our flight already existing saves us that much money on a typical Disney World trip, and the intensity of the week already planned by Make a Wish already filling our cup of excitement, that we see food and tickets as something achievable and sugar on top of this wish.

We have been saving up for it for a couple months now, and I have been trying to do side jobs and sewing to make money. My side job has been SLOW but I am focusing my energy on sewing until my fingers bleed between now and then because it is something I can do any hour of the day without committing my time and risking not fulfilling due to an unexpected appointment or issue. I have rarely used this blog to promote my web ventures, but I think this is a fitting opportunity to do so since all the money will be used towards her trip extension! I have 2 shops online, one that sells my excess fabrics and one that sells my creations. I make custom tutu's, nursing covers, burp cloths, cloth wipes, diaper/wipe cases, etc. and am working on a batch of frilly flip flops that will be sold at a local hair salon! Here are the links to my shop if you would like to check them out:

And as always, Gabriella's donation account through PayPal remains open and accessible from the right sidebar under 'How to Donate to Gabriella' (and PO Box mailing address under the Contact link above). I just ask that if you wish for any donations through there to be used for her trip, you put that in the donation notes so it can be expensed properly & honestly. This is very important!

I can't keep a full time job with Gabriella's demands, so this is my job. Making side money, selling my creations, and being the best mom possible to my little boogers! I thank you for sharing the links and spreading the word! I always believe it never hurts to put the need out there, because how else does God lead people to fill needs if they do not know they exist!!?

Saturday, July 16, 2011

Here it is again, the topic of school. Me, the mom who would rather homeschool for the first few years of education, and the battle of the pressure to send her to school. It is a constant stress in my heart.

I searched, interviewed and toured charter schools in April and May to prepare for Gabriella's 1st grade year this fall, fully knowing I was not going to put her in a general public school after what we saw and experienced for Kinder and those overworked teachers. I finally found a brand new school that I felt comfortable with, a place that FINALLY seemed like I could handle sending her to school. They have a dedicated speech therapist ON STAFF and a crazy strong focus on the students physical and mental well being. We got my godson into it and my sister in law even got a job there! Things were looking forward for Gabriella's ability to flow into a school setting and me be comfortable with it.

Then I got a call from the special ed department of the new school while Gabriella was in the hospital last month. Long story short, he proceeded to tell me that because another district wrote her IEP and she was on homebound status for Kinder, she would need to remain homebound through them until they were in a position to reevaluate her again and take her off homebound, then they would transition her slowly into a classroom setting. I was heartbroken, mainly because I had convinced myself this was what was happening, I was sending my princess off to school with kids and germs and self-sufficiency. I got my head wrapped around it, got her excited for it (even through her apprehensiveness) and it was going to happen. Then I was told to just erase my plan, it was all changing. That was a lot of work on my heart to get where I was and I did not take the news well.

Then it dawned on me, she was in rejection and given those hard core meds to stop it, which also meant knocking out her immunity again. Not only was she educationally and socially being held out of starting 1st grade, but now it was also medically necessary. I spoke to our transplant coordinator and she confirmed what I was thinking, and said it could be a few months into the year before her bloodwork shows us she is back at a level thats safe to be in school like that.

Great.

So now we are going to be starting 1st grade, yet again as a homebound student. We will be assigned a teacher, and after a couple months of homebound (medically permitting) she will start mornings only with me going with her, slowly weaning her (or me) into full time school. I don't know about you, but to me this is sounding like she will not be full time 1st grade until January or so.

I am struggling, yet again. Homebound, again. I feel even more now like she would be getting a better quality education if I enrolled her in the virtual home charter academy I have heard such great things about. Committed wholly to home school, local co-op field trips and groups, and the flexibility to meet all doctors, therapies AND school at our time schedule. Instead, we will spend another half of a school year in limbo... which doesn't excite me. Gabriella needs a structure, to be challenged and to be busy... and I feel I can have better control over that if I just commit to homeschooling.

I need to pray about this some more and try and eliminate from my pleas to God what MY plan is. School has been something of a struggle for me from the moment Gabriella was diagnosed, and I wish I had clarity towards one decision or another. Could you drop a line to God on my behalf? See if He tells you anything? :)

Tuesday, July 12, 2011

The last couple weeks have been pretty steady! Gabriella got her PICC line removed July 1 once her levels hit a more comfortable area, which meant we were able to go to my sisters house and SWIM on July 4! We have spent most of our time inside or at doctors, but have slightly ventured out to a few places with a mask on.

Gabriellas ECHO has been looking steady, and we have been able to increase her Lisinopril to aid in the recovery of the damage her rejection caused. Her bloodwork her been hovering around target ranges as well. We couldn't be more thankful for her recovery! Gabriella is now on weekly clinics again, pretty much up until her Make-a-Wish trip in September, to watch for any slight changes in her function. We will be doing blood work weekly as well, so I am sitting in a very comfortable spot as her mom knowing we are closely monitoring her. We also condensed her medication times and now we give meds 4 times a day verses 7.

No major medical updates besides these. It is just time now, giving her heart ample time to heal and recover. I have some more updates in the coming days on her school year & Make a Wish trip!

About Me

Gabriella was diagnosed in April 2009 with a severe and irreparable congenital heart defect, Hypertrophic Cardiomyopathy. On September 25 2009, just before being listed for her new heart, she suffered a left MCA stroke, impairing her right arm abilities and taking away her speech. She was finally listed and received her heart after 97 days of waiting on May 17, 2010. Gabriellasheart.com has transitioned from a diary of our simple life to a log of Gabriella's status, and proves what a warrior she is.